News Release
April 2019 | University of Pennsylvania – Empathy and cooperation go hand in hand

Taking a game theory approach to study cooperation, School of Arts and Sciences evolutionary biologists find that empathy can help cooperative behavior ‘win out’ over selfishness.

It’s a big part of what makes us human: we cooperate. But humans aren’t saints. Most of us are more likely to help someone we consider good than someone we consider a jerk.

Taking the perspective of another can help foster cooperation in a group, according to a new study by Penn evolutionary biologists.

How we form these moral assessments of others has a lot to do with cultural and social norms, as well as our capacity for empathy, the extent to which we can take on the perspective of another person.

In a new analysis, researchers from the University of Pennsylvania investigate cooperation with an evolutionary approach. Using game-theory-driven models, they show that a capacity for empathy fosters cooperation, according to senior author Joshua Plotkin, an evolutionary biologist. The models also show that the extent to which empathy promotes cooperation depends on a given society’s system for moral evaluation.

“Having not just the capacity but the willingness to take into account someone else’s perspective when forming moral judgments tends to promote cooperation,” says Plotkin.

What’s more, the group’s analysis points to a heartening conclusion. All else being equal, empathy tends to spread throughout a population under most scenarios.

“We asked, ‘can empathy evolve?’” explains Arunas Radzvilavicius, the study’s lead author and a postdoctoral researcher who works with Plotkin. “What if individuals start copying the empathetic way of observing each other’s interactions? And we saw that empathy soared through the population.”

Plenty of scientists have probed the question of why individuals cooperate through indirect reciprocity, a scenario in which one person helps another not because of a direct quid pro quo but because they know that person to be “good.” But the Penn group gave the study a nuance that others had not explored. Whereas other studies have assumed that reputations are universally known, Plotkin, Radzvilavicius, and Stewart realized this did not realistically describe human society, where individuals may differ in their opinion of others’ reputations.

“In large, modern societies, people disagree a lot about each other’s moral reputations,” Plotkin says.

The researchers incorporated this variation in opinions into their models, which imagine someone choosing either to donate or not to donate to a second person based on that individual’s reputation. The researchers found that cooperation was less likely to be sustained when people disagree about each other’s reputations.

That’s when they decided to incorporate empathy, or theory of mind, which, in the context of the study, entails the ability to understand the perspective of another person.

Doing so allowed cooperation to win out over more selfish strategies.

“It makes a lot of sense,” Plotkin says. “If I don’t account for your point of view, there will be many occasions when I judge you harshly when I really shouldn’t because, from your perspective, you were doing the right thing.”

To further explore the impact of empathy on cooperation, the researchers looked at a variety of frameworks, or social norms, that people might use to assign a reputation to another person based on their behavior. For example, most frameworks label someone “good” if they reward a fellow “good” individual, but social norms differ in how they judge interactions with a person deemed bad. While the “stern judging” norm labels “good” anyone who punishes a bad actor, the “simple standing” norm does not require this punitive approach: A “good” person can reward a bad one.

Plotkin, Radzvilavicius, and Stewart discovered again that capacity for empathy mattered. When populations were empathetic, stern judging was the best at promoting cooperation. But when a group was less willing to take on the perspective of another, other norms maximized rates of cooperation.

This result prompted the team to ask another evolutionary question—whether empathy itself can evolve and become stable in a population. And under most scenarios, the answer was yes.

“Starting with a population where no one is empathetic, with people judging each other based on their own perspective, we saw that eventually individuals will copy the behavior of those who judge empathetically,” says Plotkin. “Empathy will spread, and cooperation can emerge.”

This was the case even when the researchers accounted for a degree of errors, noise, and misperception in their models.

The findings open up a new area of research for both evolutionary theory and empirical studies into how societies behave.

“Empathy is completely foreign to game theory,” Radzvilavicius say. “In a way this is finding a new niche for research to progress to in the future, accounting for theory of mind.”

Looking ahead, the Penn team hopes to pursue such questions, perhaps by pitting different social norms against one another and eventually by testing their ideas against observations from real people, either through experiments they design or through data collected from social media.

“It’s obvious that in social media people are acutely aware of their public persona and reputation and curate it carefully,” Plotkin says. “It would be fascinating to analyze these evolutionary dynamics as they play out in online interactions.”

Reading up on all the news, reports and discussions on the aged care royal commission, it makes me wonder if personhood is forgotten in dementia care. Recognition, respect and trust is not rocket science and that’s just common sense. What’s happened to aged care? Why is it that people living with dementia are now being objectified, disrespected and feared in aged care. How did we go so wrong?

Last month the aged care minister Ken Wyatt announced he would introduce regulations to address the use of “chemical restraint” in residential aged care – a practice where residents are given psychotropic drugs which affect their mental state in order to “control” their behaviour.

Psychotropic medications used as “chemical restraints” are antipsychotics, antidepressants, anti-epileptics and benzodiazepines (tranquilisers).

Wyatt followed this announcement this month with a A$4.2 million funding pledge to better monitor care in nursing homes through mandatory “quality indicators”, and including one covering medication management.

Of course, you would be hard pressed to find a staff member admitting to controlling a resident by giving them a tablet. Instead, most staff would stress that medication was given to calm or comfort them.

But our research shows psychotropic use is rife in Australia’s aged care system.

Reforms are desperately needed, but we need to develop the right approach and learn from countries that have tried to regulate this area – most notably the United States and Canada.

What’s the problem with antipsychotic drugs?

Antipsychotic drugs such as risperidone and quetiapine are often used to manage behavioural symptoms of dementia.

But large reviews conclude they don’t work very well. They decrease agitated behaviour in only one in five people with dementia. And there is no evidence they work for other symptoms such as calling out and wandering.

Due to their limited effect – and side effects, including death, stroke and pneumonia – guidelines stress that antipsychotics should only be given to people with dementia when there is severe agitation or aggression associated with a risk of harm, delusions, hallucinations, or pre-existing mental illness.

The guidelines also state antipsychotics should only be given when non-drug strategies such as personalised activities have failed, at the lowest effective dose, and for the shortest period required.

The high rates of antipsychotic use in Australian aged care homes indicates the guidelines aren’t being followed.

In our study of more than 12,000 residents across 150 homes, we found 22% were taking antipsychotics every day. More than one in ten were were charted for these drugs on an “as required” basis.

We also found large variations in use between nursing homes, ranging from 7% to 44% of residents. How can some homes operate with such low rates, whereas others have almost half their residents taking antipsychotic medications?

Regulations to reduce chemical restraint

Of all countries, the US has made the most effort to address high rates of antipsychotic use.

After reports in the 1980s highlighting poor nursing home care, Congress passed the Omnibus Budget Reconciliation Act which sets national minimum standards of care, guidelines to assist homes to follow the law, and surveyors to enforce it.

For residents with dementia and behavioural symptoms, the regulations require documentation of the behaviour, a trial of non-drug strategies such as activity programs, and dose reductions after six months.

Homes that don’t meet these regulations are subject to a series of sanctions, ranging from financial penalties to closure.

The regulations were initially associated with substantial declines in antipsychotic use. By 1995 only 16% of residents were taking them.

But average rates of use rose to 26% by 2010. And in 2011, a Senate hearing found 83% of claims for antipsychotics in nursing homes were prescribed for unlicensed use.

This led advocates to conclude the regulations and surveyor guidance were ineffective.

Quality indicators to reduce chemical restraint

Another way to reduce antipsychotic use in aged care homes is by mandatory quality indicators, along with public reporting. The US introduced this in 2012. A similar system was instituted in Ontario, Canada, in 2015.

Measures are essential for quality improvement. But they can also lead to unintended consequences and cheating.

In the US, antipsychotic rates for people with dementia has allegedly reduced by 27% since the start of their quality indicator program.

But those diagnosed with schizophrenia were exempt from reporting. Then the percentage of residents listed as having schizophrenia doubled from 5% to nearly 10% of residents within the first few years of the initiative. So 20% of the reduction was probably due to intentional mis-diagnosis rather than an actual decrease in antipsychotic use.

A recent US study has also shown that the use of alternative sedating medications not subject to reporting, specifically anti-epileptic drugs, has risen substantially as antipsychotic use declined, indicating widespread substitution.

In Ontario, the use of trazadone, a sedating antidepressant, has also markedly increased since its antipsychotic reporting program began.

Public reporting is often also time-consuming, with some researchers arguing that time spent managing quality indicators may be better spent providing care for residents.

Where to now?

Awareness of a problem is the first step to addressing it, and chemical restraint is a key issue coming to light in the aged care royal commission.

The proposed regulations and new quality indicator will allow homes and regulators to monitor the use of chemical restraint, but more importantly, should be used to assess the impact of training and other strategies to ensure appropriate use of psychotropic medications.

But to meet their full potential, these programs need to be carefully designed and evaluated to ensure that cheating, under-reporting and substitution does not occur like it did in North America.

It’s an uncomfortable image to consider: an elderly person – perhaps somebody you know – physically restrained. Maybe an aged care resident deemed likely to fall has been bound to his chair using wrist restraints; or someone with dementia acting aggressively has been confined to her bed by straps and rails. These scenarios remain a reality in Australia.

The Australian government has recently moved to regulate the use of physical and chemical restraints in aged care facilities. This comes ahead of the Royal Commission into Aged Care Quality and Safety.

Certainly this is a step in the right direction – but banning physical restraint is unlikely to remove it from practice. If we want to achieve a restraint free approach we need to educate the sector about viable alternatives, which aren’t always pharmacological.

The scope of the problem

The rate of physical restraint in Australia is difficult to ascertain. One study across five countries examining the care of residents over one week reported between 6% (Switzerland) and 31% (Canada) of residents had been physically restrained.

While injuries caused directly by physical restraint could include falls and nerve injury, the impacts go beyond this. A significant consequence of restraint is its immobilising effects which can lead to incontinence, cognitive decline and a general deterioration in a person’s physical condition.

In physically restraining residents, staff are failing to employ other evidence‐based interventions. Behavioural and psychological symptoms of dementia can be managed by strategies such as improving sleep, controlling pain, music therapy, orientation therapy, and, if required, one-to-one care.

Restraints don’t work

Our recent review of studies into the practice identified 174 deaths of nursing home residents due to physical restraint. The eight studies reviewed came from the US and Europe between 1986 and 2010.

This research reaffirmed the view that restrained individuals still experience falls, which the restraints often seek to prevent. But perhaps most compelling were the findings that physically restraining patients with dementia increases agitation, worsens behavioural and psychological symptoms, and hastens their cognitive decline.

Care staff need to be better equipped to look after patients without resorting to physical restraint.From shutterstock.com

We’ve also undertaken a detailed analysis of resident deaths in Australian nursing homes reported to the coroner between 2000 and 2013. This uncovered only five deaths due to physical restraint. All residents had impaired mobility and the physical restraints had been applied to prevent falls. The residents died from neck compression and entrapment caused by the restraints.

Current processes

Most would expect the use of physical restraints would be closely monitored, with any harm reported to a regulatory or professional body. This is not necessarily the case in Australia.

Reporting often lags due to an unclear understanding about what constitutes physical restraint, and perhaps because little is forthcoming in the way of alternatives to address these residents’ care needs.

The only systematic voluntary scrutiny that could apply exists in principle, though not largely in practice, via the National Aged Care Quality Indicator Program. Fewer than 10% of aged care providers around the country participate in the quality indicator program, and the results of these audits are yet to be released publicly.

It’s only when a death occurs that a report to an independent authority – the Coroner’s Court – is made.

Why legislating doesn’t go far enough

Similar laws introduced in other countries to ban physical restraint haven’t worked. In the US, there was an initial decrease in use of restraint and then a gradual return to previous levels.

Abolishing the use of physical restraints on nursing home residents remains challenging because of the widespread but incorrect perception that physical restraints improve resident safety. Nursing staff report using physical restraints to guarantee residents’ safety; to control resident behaviour while fulfilling other tasks; or to protect themselves and others from perceived harm or risk of liability.

Changing laws does not change attitudes. Education and training is required to dispel the myths and inform that better options than physical restraint already exist. Otherwise staff, family and the general public will continue with a mistaken belief it is safer to restrain a person than allow them to move freely, or that restraint is necessary to protect other residents or staff.

Our team convened an expert panel to develop recommendations for addressing the issue. We considered three of our 15 recommendations to prevent the use of physical restraint among nursing home residents the most important.

The first is establishing and mandating a single, standard, nationwide definition for describing “physical restraint”. A universal definition of what constitutes physical restraint enables consistent reporting and comparability in nursing homes.

Secondly, when there are no viable alternatives to physical restraint, any use should trigger mandatory referral to a specialist aged care team. This team should review the resident’s care plan and identify strategies that eliminate the use of physical restraint. This requires improved access to health professionals with expertise in dementia and mental health when a nursing home calls for help.

Thirdly, nursing home staff competencies should be appropriate to meet the complex needs of residents, particularly those with dementia. This is the long term solution to eradicate the need to apply physical restraint and is achievable with national education and training programs.

The harm from physical restraint is well documented, as are the potential solutions. Changing the legislation is a necessary step, but will not change practice on its own. Addressing as many of the underlying contributing factors as possible should commence alongside the government’s call for tougher regulations.

For people living in Australia’s residential aged-care facilities, these needs are often not met.

Most residents do not feel they are loved or belong in the facility. Like aged-care resident Neda Borenstein, whose secret camera footage broadcast on ABC’s Four Corners showed her singing the Australian national anthem in bed while she waited more than three hours to be changed. “I’m just a number,” Neda told her carer when she finally returned to help her up.

Less than one-third of residents we interviewed said they were friends with another resident. This means most don’t have the social support associated with friendships. Most residents said they felt socially isolated, which is associated with poor well-being.

A 2016 study of residents’ lived experiences in an aged-care facility found many felt they had little dignity, autonomy or control. Outside of meal and structured activity times, people with dementia spend most of their time stationary, alone and doing very little or nothing.

One study looking at interactions between residents and their carers showed residents were alone 40% of the time they were observed. When staff were present, they mostly did not engage verbally, emotionally or physically with the resident.

Aged-care facilities can also feel psychologically unsafe to residents.
Residents with dementia may be locked in secure units or physically restrained, using mechanisms such as bedrails or restraining belts.

Residents sometimes don’t get along. They might argue yell, swear, pinch, hit or push each other. We don’t have good data about how often resident-to-resident verbal and physical aggression happens, but it can result in injury and even death.

The consequences of unmet needs?

Residents can react negatively when their needs are not met. They become bored, sad, stressed, cranky, anxious, depressed, agitated, angry and violent.

In people with dementia, we used to call these reactions “behavioural and psychological symptoms of dementia” (BPSD). But people with dementia have been pointing out these are normal human responses to neglect, not symptoms of dementia. Almost all (90%) aged-care residents display one or more of these negative reactions.

In many facilities, staff “manage” such reactions with the use of sedating antipsychotic medications. But clinical guidelines recommend looking at the reasons people may be reacting that way and addressing those before medication.

Why does Australian aged care fail to meet fundamental human needs?

We might not be spending enough on aged care to enable providers to meet fundamental human needs. Australia spends about 1% of its GDP on long-term care – less than the OECD average of 1.5%.

Private investment in aged care is growing, as have residential aged care profits, but it’s a difficult industry in which to make money. Insufficient funding translates to insufficient staff and less skilled staff. Our funding system rewards dependency, and there are no funding incentives for providers to improve the psychological well-being of residents, or go beyond that to help them flourish.

Friendships are an important part of healthy ageing.from shutterstock.com

People looking for a nursing home don’t have any independently provided information by which to compare quality or performance.

The National Quality Indicator Program – a program for measuring care in residential aged-care facilities that began in 2016 – was meant to provide information for people trying to compare facilities on clinical indicators of care quality.

But participation in the program is voluntary for providers. Neither quality of life nor emotional well-being indicators are included in the suite of quality indicators (even though one has been trialled and found to be suitable). We also don’t know if or when the data might be published.

What is needed?

We need a fundamental shift in community, government, service provider, staff and regulatory expectations of what residential aged care does. Our model of aged care is mainly about clinical care, while neglecting emotional care.

For instance, friendships are a unique social interaction that facilitate healthy ageing, but many residents told us that the social opportunities in their nursing home did not align with their expectations of friendship.

We need our model of care to be a model of a home. In a home everyone contributes, has a say in what happens in the home (such as the menu, interior design, routine and functions), is able to invite their friends to their home for a meal, and can leave during the day and come back at night. A home is a safe place, where people are loved and nurtured, and where they can be active and fulfilled.

News Release
April 2018| Australia – You’re the voice: the evolution of the PainChek app

How can someone tell you they’re experiencing pain or discomfort that isn’t overtly visible, if they can’t communicate through speech? Professor Jeff Hughes from Curtin’s School of Pharmacy and Biomedical Sciences has created an app that gives a voice to people who are living with conditions that impact upon their ability to verbally communicate with others.

One of these conditions is dementia, a neurodegenerative condition that affects the brain’s cognitive ability. It’s currently the second leading cause of death in Australia, and with the number of people living with dementia set to reach more than 536,000 by 2025, the demand for tools that help treat and manage the condition is sure to increase.

Professor Hughes’ brainchild was the world’s first smartphone app for pain assessment and monitoring, developed under the banner of Curtin start-up company ePAT (electronic Pain Assessment and Technologies Ltd) from 2014. The start-up was acquired by PainChek Ltd in 2016, and the app is now being further developed and marketed by the company as ‘PainChek’.

The app provides an accurate and reliable means for healthcare professionals and family members providing care at home to assess pain, and ultimately help to improve quality of life for those they care for.

“A significant issue among people with advanced dementia is that they no longer have the communication skills to express the level of pain they are suffering,” Hughes explains.

“The seriousness of their pain can often go unrecognised. But PainChek, a smart-device app, which utilises automation and artificial intelligence, allows for the detection and quantification of pain, based in part on a patient’s facial expressions.

PainChek uses facial recognition and a 42-point pain scale to help healthcare professionals and family members decipher the level of pain being experienced by their patient or family member, allowing them to respond accordingly. A level between zero to six represents no pain, seven to 11 mild pain, 12 to 15 moderate pain and anything above 15 means severe pain.

The tailored pain scale was developed by Hughes and his team through a tireless review of existing literature and tools, including the well-known Abbey Pain Scale, an observational pain assessment tool used nationally in the assessment of pain in people with dementia.

PainChek automates pain assessment, allowing for the continual evaluation of pain, and providing the user with access to a personalised pain chart of their patient or family member, which has been mapped over an extended timeframe. The chart is designed to be used in conjunction with other information recorded on the app, which correlates with or affects pain levels, such as medication types and dosages, activity levels and behaviour. All recorded data is backed up when the device is connected to the internet.

Since its inception in 2013, Hughes and his team have been working hard to assess and monitor the performance of the app. They’ve conducted validation studies with a range of Perth-based aged care providers, including Mercy Care, Juniper, Bethanie and Brightwater, comparing each generation of the app with the Abbey Pain Scale. Data from these trials was used to support the registration of the app as a Class 1 medical device in Australia (Therapeutics Goods Administration registration) and Europe (CE Mark) by PainChek Ltd.

Trials in aged care facilities were successful, validating the functionality and purpose of PainChek. One of the residents living with dementia was previously cared for at home by her husband. He says the app has been an invaluable tool for assessing his wife’s constant lower back pain.

“When we tested the app on my wife, we got a score of four out of 10. It was so quick and accurate. She’s in pain constantly with her lower back, and has trouble sitting down. The pain scale changes daily, and it makes me feel really comfortable that I can administer the necessary pain killers at any given time.”

In addition, the research has led to the development of a partnership with Dementia Support Australia, which comprises the two entities Dementia Behaviour Management Advisory Service and Severe Behaviour Response Teams.

“Dementia Support Australia sends consultants out to assist in the care of people living with dementia who have significant behavioural problems,” Professor Hughes says.

“What they had found from their own observations was that somewhere between 35 to 60 per cent of the people had undetected or undertreated pain, and they wanted the means to improve the assessment and documenting of that pain, and better demonstrate the effectiveness of their service.

“PainChek Ltd are effectively doing an implementation trial with them, starting here in Western Australia and then in South Australia. As part of the trial, we provide training and, after each roll out, we also offer clinical and technical support. In 2018, we’ll roll out the app to all 150 of their consultants Australia-wide.”

The development of the app hasn’t stopped there, with PainChek Ltd working on adaptations that can cater for other groups unable to communicate verbally: infants and pre-verbal children.

“Twenty per cent of children have chronic pain, with common causes being headaches and gastrointestinal or musculoskeletal conditions. And that pain can produce a whole range of issues, such as behavioural problems, poor interaction with others and avoiding school. Most people think that little kids don’t feel pain the way adults do, but we’re learning this isn’t the case,” Hughes reveals.

The intended impact of the children’s app is three-fold. One, to provide parents with surety about whether they’re taking the appropriate action. Two, to assist healthcare professionals in deciding what level of pain a child might be in and which medication to administer if applicable, and three, to encourage the investigation of the root cause of the pain to then seek the appropriate treatment.

Much like the adult app, the children’s app contains a number of items to help assess pain, however, the facial recognition element is far more in-depth due to the fact that children typically use more pain-associated facial expressions than adults. As a result, Hughes’ team has been capturing videos of children who are in pain, primarily during the immunisation process, with each video contributing to a database of coded images. With a preliminary algorithm already built, PainChek Ltd plans to have the first prototype available for trialling in 2018.

A case study on Dementia Training Australia’s work with Scalabrini Village is featured in the program Every Three Seconds, a collaboration between ADI and ITN Productions which highlights the fact that someone in the world is diagnosed with dementia every three seconds.